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Winter and the BUGS

Autoimmune diseases such as MS, Rheumatoid arthritis, psoriasis, Crohn’s and ulcerative colitis all have the basic problem where the individual’s immune system turns against itself as opposed to fighting the outside world. Something beyond the genetic set up is needed to trigger the disease and so far, celiac disease (or gluten intolerance) is the only autoimmune disease where we know what the trigger is – gluten. There are about 100 different autoimmune diseases, and in the US alone, about 50M people suffer from one or more of these conditions.

Type 1 diabetes is also an autoimmune disease, but in contrast to the ones I mentioned above, the treatment is rather different due to the progression of the disease. When a person is diagnosed with T1D, their insulin-producing cells are almost already all gone. Although scientists have shown that the human pancreas may have some regenerative capacity under certain conditions (obesity and pregnancy for example), we are not leveraging that in today’s clinical practice since there is no drug approved for that purpose yet, and we have not come up with a safe way to combat the immune system at the same time. That is the very issue with T1D, it is a constant battle between the body’s own immune system which is trying to destroy insulin-producing cells, and the lack of the body’s regenerative capacity in the pancreas. This battle can be distorted for years, and that is why some people are diagnosed as toddlers while others in their 40s! When one is diagnosed as an older individual, most often the disease is less aggressive, and perhaps these individuals still have some cells left and thus some endogenous (their own) insulin capacity.

Back to the contrast with other autoimmune diseases – in diabetes the treatment is to replace the missing hormone, insulin or to enhance the effects of insulin, while in other autoimmune diseases the treatment is to reduce the autoimmune attack since the tissue that is being destroyed often is regenerated in between flares. For example, in Crohn’s disease, the intestine is the target, but during long periods of time, there are no symptoms at all, and the goal of course is to maintain that status for as much time as possible without impacting other functions of the immune system.

So what are the risks now that we are entering the winter months? Well, for one, the flu season is upon us, children are gathering inside rather than outside, incubating their germs and spreading them more easily. There is no good scientific episode to show that the cold weather would trigger virus and bacterial infections, but common sense still says we seem to get sicker when we are cold. A person with an autoimmune disease, who needs daily medication to inhibit the immune system from destroying an organ system or tissue, is more vulnerable to catching and developing a more serious infection. The bigger problem is when the individual has caught an infection, and it spreads, since the best way to limit the damage is to improve one’s own system, but by doing this, the autoimmune disease is less restricted and can cause a flare.

My personal situation is further complicated by two organ transplants and the medication I am taking to reduce the risk of rejecting those organs. When I develop an infection, my doctors often reduce the amount of immune suppressing medication I take to allow for my own system to get rid of the infection in addition to quickly determining what the agent is that we are dealing with so that the right kind of anti-infective medication can be put in place. Targeting the virus, bacteria or parasite correctly and quickly is of utmost importance, and today’s analytical equipment is quite sophisticated but it still often takes days for the final result. Prior to having that, the doctors often prescribe some super duper antibiotic to kill off a majority of bugs, and in my case, that lead to opportunistic bugs taking over last year and three bouts of clostridium difficile ensued. When the immune suppressants have been reduced, I face two major threats, one being rejecting my kidney and pancreas on the basis of foreign bodies inside my body, and the second one my own autoimmunity may flare up and start attacking the new pancreas, like it did my first one.

My advice to anyone with an autoimmune disease, or with an organ transplant, is to try to avoid getting sick! Easier said than done, and one cannot live one’s life inside a bubble, but there are a few simple precautions:

1: avoid interacting with large groups of people (especially young children) inside during the winter months

2: wash your hands after using public transportation and before having food or drinks

3: do not eat any raw foods in restaurants, including pre-cut fruits

4: ask for water without ice when traveling to exotic places

5: if someone at work or in school is sick, do not interact with them

6: as soon as you start feeling a cold coming on, take precautions such as hydrate, rest, and if you have a temperature, seek medical advice asap

7: make sure you have taken the flu shot and any other vaccinations appropriate in the locale you are residing

 

 

Diabetes and Tennis:When I Was First Diagnosed

I used to play tennis every day and often more than 1 hr each day – I loved the game and I was very good at it. This was before I was diagnosed with diabetes – after that, I never won again and I lost my love for the game completely.

I don’t think diabetes is 100% to blame for this, but probably at least 50 percent. When I was diagnosed, the summer of 1989, I had just reached the finals of a large national tournament in Sweden, and even though I lost in the final, I had done very well, especially since I had suffered from tonsillitis three times during the spring preceding this event, and I had been seriously injured the year before.

However, after my diagnosis I lost my confidence in my body. I had never had such a failure in my life and here I was, at 17 years of age (I spent my bday in the hospital getting trained on injections and glucose monitoring), feeling like I was suddenly disabled. Little did I know that the complications they warned me about during those first few weeks with diabetes would be a reality less than 20 years later and that I would go through two transplants before I turned 40!

Tennis represented so much to me as a young person, I spent most of my free time either playing tennis, getting to tournaments, working out to play better or preparing ahead of games. I loved going to my club and I even loved hanging out after tennis, relaxing and feeling the work-out in my body and if I had won, feeling strong and confident.

I guess the closest to this feeling in my current life, is when I present at conferences or when I have an important business meeting. I have the same feeling of anticipation, preparation and then during the presentation I have a high – triggered by endorphins and I am on top of the world for the duration of the event. The problem is coming down afterwards.  Being in the zone is all and well, but afterwards I feel empty, anxious and even sad.

As a diabetic, sometimes these events could be affected by my disease. For example, if my blood sugar was running low and I had to go up on the stage for a presentation, I would need to quickly eat something to avoid the risk of passing out and the absolute certainty of presenting poorly because my brain did not have enough sugar to work with. When I was high, I could also feel it, since I would get slower in my thoughts and especially in my reasoning. I would rather be high than low, and my solution to avoiding this roller coaster was to always keep myself slightly high, but not high enough to be slow, blurry-eyed or lethargic.

After getting my pancreas transplant in January of 2010 I have not experienced any of these feelings and it is such a relief and such an advantage! I sometimes say that I did not know how hard it was living with diabetes before I got a pancreas transplant and realized what normal life is supposed to be and how good I felt. Achieving that feeling for everyone with diabetes is our goal, and while we pursue the cure, we need to identify a range of products that can help people with daily life.

I hope that I will get back to tennis one day, but for some reason, tennis more than any other sport is linked to my life before diabetes that I lost. I know that I have a new chance, and should be incorporating tennis into my life, but it is easier for me to exercise otherwise without ever feeling that diabetes, transplants and age have had a negative effect on my performance!

The Importance of Patient Entrepreneurs

Lately, there has been a change in the approach of how people are perceiving diabetes and the people living with the disease. 

When I was diagnosed with T1D in 1989, diabetes was considered a very serious disease. One changed behaviors, got on insulin, and tried very hard to avoid going high in blood sugar to avoid complications. Nowadays, the attitude is that we live with the disease and can be like everyone else! ‘The disease should not limit us, and if we use advanced gadgets we can live beyond the disease without thinking about it too much.’

As you can imagine, this attitude does not work with the chronic and progressive nature of the disease.

Despite all technology, we cannot live a life without thinking about diabetes all the time if we want to stay healthy.

This is the problem with today’s approaches and the spirit in which we are teaching our newly diagnosed friends and family. There are definitely individuals who, like me, want to understand every aspect of diabetes to treat it better and to find a cure for everyone. Though the larger group of people just want a life in which they can focus on family, work, hobbies and everything but diabetes!

So what can we do? The over ambitious few will always pursue additional detail, perfect blood sugars and the financings of products that make the control a little bit better with a lot of extra effort. Even I, being an MD, PhD, and life sciences executive for almost two decades, could not manage the technology day in and day out. I ended up attempting to stay stable, but was a little too high most of the time (which led to kidney and eye complications). So how can someone with a busy life who is less tech savvy use all these new devices?

For the people with little time to themselves, lack of access and training, we must find other motivators and ways to achieve control until we find real cures.

There are great examples of success using this principle – John Sjölund created a cap for insulin pens that tells the patients when and how much insulin was dosed; Jennifer Ross is responsible for Bemixed, a sugar-free, organic and delicious cocktail mixer; Jeffrey Brewer leads Bigfoot with a team of people motivated beyond money to create a closed loop that removes the burden of dealing with diabetes; Matt Loper motivated by his family’s plague with T2D is creating an incredible based adherence plan that helps patients improve their health and thus reduces costs for insurers and providers. Finally John Crowley’s career has been motivated by his children’s struggle with Pompe’s Disease, a rare neuromuscular disorder, to found Novazyme Pharmaceuticals in his quest to find a cure.

At Lyfebulb, we want to create an environment where leading drug/device/biotech and Healthcare IT, as well as consumer companies, listen to innovators and leaders from the patient communities – not just for marketing and advocacy but for innovation and strategy.

Patient Entrepreneurs are future leaders in their own space – they are motivated by their personal curse that they have turned into a passion and an opportunity to create wealth and power.

What could be better from a socioeconomic perspective than to move the cost from the victim to revenue generated by a patient leader?

As people living with diabetes, it should never be a sacrifice to modify our diets or change our behavior – it is an investment in our future! Take charge of your health and future – become or start supporting patient entrepreneurs!

Where Are They Now? 2016 LBNN Award Finalist: John Sjölund, CEO and Co-Founder at Timesulin

In continuing our “Where Are They Now” series where we follow up with the finalists of the 2016 Lyfebulb-Novo Nordisk Innovation Award, we spoke with John Sjölund, CEO and Co-Founder of Timesulin. Since the award, the biggest news for John is that his business was acquired by Bigfoot Biomedical and he will be joining the team to lead their initiatives to bring a connected insulin pen, with automated dose titration to market. Read on to learn more about the partnership, his opinion on Patient Entrepreneurs, and his piece of advice for those thinking of applying for the 2017 Lyfebulb-Novo Nordisk Innovation Award.


Bruna Petrillo: Hi John! For those who are not familiar with your company, tell us a little bit about Timesulin.

John Sjölund: We created Timesulin based on my own experiences of living with Type 1 diabetes for over 30 years. Living an active life and traveling, I was constantly struggling to remember if I had taken my insulin, via an insulin pen, or not.

Frustrated at not having any product that could solve my issue ever come to market, together with a friend, we 3D printed our first product. As I started showing it to more people, more wanted one. We had a business on our hands accidentally. The product is not used by hundreds of thousands of people around the world.

Timesulin is a replacement cap for the most commonly used insulin pens used today. It has a simple timer in it that tells you when you took your last insulin injection  -helping you to avoid a missed dose OR dangerous double dose.

BP: 3D printing- that’s great! You were a participant of the 2016 LBNN Award, could you tell us what your biggest take-away from the Summit was?

JS: I was amazed at the size of Novo Nordisk – both in terms of the physical size of their production facilities as well as a number of incredible talents engineers they had that participated in the summit. There are a lot of people with diabetes and we know that most of them desperately need help to allow them to live safer, more balanced lives.

Additionally, it was a fantastic opportunity to network with Karin of Lyfebulb and the other participants. The entire group is so passionate, so smart – I was amazed.

BP: Why do Patient Entrepreneurs matter?

JS: Unfortunately, it is very hard for people that are not living with a chronic disease, to understand the huge burden we have all day long to take care of it. It is never ending and relentless.

Being a patient, I believe, provides a unique window into the cognitive challenges of living with the disease and what tools, no matter how simple, can be created to reduce the burden.

BP: Since the LBNN Award, Timesulin has been acquired by Bigfoot Biomedical. Can you tell us a bit about this acquisition?

JS: We are absolutely thrilled to be joining together with the team at Bigfoot to continue to drive towards making diabetes simpler, safer and promoting better life balance. I have never encountered a team that has such a strong personal commitment or vision to dramatically change diabetes for the better.

Bigfoot will be incorporating the Dose Capture technology we have developed into their platform. What this means is we will have a comprehensive solution to dramatically make diabetes easier – through machine learning, automation and smart design, no matter how you decide to take your insulin.

we will have a comprehensive solution to dramatically make diabetes easier…

BP: How do see you the future of this partnership and Timesulin?

JS: As the future of diabetes. Connected products that allow for automated decision support and auto-titration is the final step, I believe, before smart insulins and ultimately a cure.

Patients who want to use closed loop systems (sometimes called artificial pancreas) should be able to leverage the best technology irrespective if they want to use an insulin pump OR an insulin pen. We will allow for this.

BP: What advice would you give to those applying for the 2017 LBNN Award?

JS: Spend time on your application since this is circulated widely before you have the opportunity to present in person.


Learn more about the 2017 Lyfebulb-Novo Nordisk Innovation Summit & Award and apply HERE.

 

Where Are They Now? 2016 LBNN Award Winner: Brianna Wolin

As we look forward to the 2017 Lyfebulb-Novo Nordisk Innovation Summit & Award, we are also taking some time to reflect back on last year. In our series, ‘Where Are They Now,’ we chat with the finalists of last years award to hear about the importance of the award in the future of diabetes management, and what they have been up to since then.

To kick off the series, we spoke with the winner of the inaugural 2016 Lyfebulb-Novo Nordisk Innovation Award, Brianna Wolin, CEO and co-founder of Find Your Ditto.


Bruna Petrillo: Hi Brianna! For those who are not familiar with your company, tell us a little bit about Find Your Ditto.

Brianna Wolin: Find Your Ditto is a mobile platform that connects people living with the same chronic illness locally for on-demand, in-person peer support. Individuals living with chronic illness(es) are 2-3x more likely to live with depression comorbidly than the general public; however, in-person peer support has demonstrated strength in combatting the concern. Find Your Ditto serves to mobilize peer support communities for chronic illness patients, ultimately seeking to influence poor self-efficacy and reduce the associated unnecessary healthcare spend annually.

BP: What is the importance of Patient Entrepreneurs?

BW: As I tell people frequently when speaking about my work on Find Your Ditto, Patient Entrepreneurs have a unique, crucial advantage in understanding their target market. We are both designers and users of solutions, situating ourselves at an often un-accessed crossroads where we can make more impressive impact on our own patient communities.

…Patient Entrepreneurs have a unique, crucial advantage in understanding their target market

BP: You were a participant of the 2016 LBNN Award, what was your favorite part, and biggest take-away from the summit?

BW: The summit was an incredible experience. As a near life-long diabetes patient watching the evolution of concerns in the diabetes community— most recently focused on #insulinforall— I was an average insulin consumer believing I was paying the big Novo Nordisk entities huge dollar numbers annually to stay alive without feeling that there was recent innovation in care nor particular concern from the big corporations for their patients. The summit provided me the opportunity to meet the real people behind the life-sustaining drugs I take every day. I learned deeply about their concerns regarding the slow pace of innovation due to the true corporate structure hold-ups and how they do, in fact, feel personally upset with the current state of the diabetes community’s relationship with the pharmaceutical industry. It’s easy to forget the faces and spirits behind our concerns as a community and the summit gave me new perspective about the desire for innovation within pharma.

BP: How did you feel when you found out you were the winner of the award?

BW: As most of the online community has seen, my jaw literally dropped when my name was announced {be sure you see that video clip!} I was surrounded by a cohort of true diabetes innovators and am forever grateful to be considered in their company and to call them close friends in this important field of patient entrepreneurship.

BP: What has been your biggest accomplishment since the LBNN Award?

BW: The Find Your Ditto team has been busy since the LBNN Award! Most notably, we’ve really adjusted our business model and secured healthcare system partners for paid pilots this year. Additionally, I was honored to be in the WiSTEM women-owned business accelerator within the #1 technology incubator in the US, 1871 Chicago.

BP: Tell us how you see the future of Find Your Ditto.

BW: As entrepreneurs, we’re always talking about our visions. My cofounder, Parisa, and I always speak about five years down the line— we imagine a world where no person living with chronic illness ever has to feel alone. We talk about the day where Find Your Ditto is a resource given to all patients from the moment of diagnosis through their chronic illness journey.

BP: What advice would you give to others who are applying for the 2017 LBNN Award?

BW: This year’s award promises to be everything last year’s was and more— complete with VC conversations and even a monetary prize! But, make no mistake— one of the biggest values in this award is being in the company of other diabetes innovators. As a mentor of ours, Ryan Gourley of TechArb, always says:

“just throw your hat in the ring.”

If you are thinking about applying but fear that you’re “not ready” or “not quite the fit”— put an application in! Use every opportunity available to you to get your idea out there. And contact me if you have any questions via LinkedIn or brianna@findyourditto.com.

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